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Having Crohn’s For 7 Years Now

I have had Crohn’s for 7yrs. I’ve been having blockages almost every 3 months since Sept 2015. Doctor feels Humira is not working now, and I am now on it every week instead of twice a month. I am also coming off Prednisone, but was put on Entocort. Doctor told me surgery is in the future, a resection. Am wondering if I’ll have to go through another NG tube, and have to do a bowel cleanse before surgery. Also about what is the recovery time? I find out more info June 15th. My diet now is all soft. Baby food, cooked canned soft carrots, egg whites, bread, water ice, jello. This is all I eat. Any advice would be greatly appreciated.

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  • 3 years ago

    Hi Audrey!
    So sorry you are having such a tough time. I am a 35 year veteran of Crohn’s. I have had 8 resections, and various other syrgeries.
    Can’t predict what you would have to do to prepare for surgery. The only times I have had to cleanse the bowel, was for colonoscopies. I guess it depends on the surgeon.
    An NG tube is pretty standard, especially with obstruction. As uncomfortable as it is, it helps to get the air and fluid out that has no other way out because of blockage. I have had many of them, and they are no fun, but have to admit it does help. I have always had it on admission from the ER, and it stays in, until everything is working again.
    The best thing is to stay hydrated. You can’t go without fluids. Whatever soft, easy to digest foods…. I generally have no appetite with obstructions. Sometimes, they resolve themselves, and other times, I have to go in the hospital. I guess after 35 years, I just know what feels like it can wait, and what is an emergency.
    Just do what feels right for you, and what your doctor recommends. Have you tried different soups that have substance to them? Butternut squash soup, things like that?
    Every one if us is different even though we have the same illness. There are varying degrees of severity, and Crohn’s can be active in o naany places throughout. Your treatment will be based on those things. One thing for sure, you are not alone.
    Please keep us posted. Thinking of you.

  • Kelly Dabel moderator
    3 years ago

    Sorry for the delayed response Audrey and that you are facing a possible resection. The question of bowel prep is one you’ll need to ask your doctor and surgeon about. It is likely that you’ll have an NG tube to suction right after surgery, but each surgeon may do things differently and they would know best about your estimated recovery time. Are you able to eat pureed meats? I see you mentioned egg white, which is a good protein source. Always discuss with your doctor and Dietitian first, but increasing your protein intake a bit before surgery, if you tolerate it, may help build your protein stores in anticipation of not eating as much. Some protein powders can be added to pureed foods as well. In addition to speaking with your doctor, this article on Bowel resection surgery may be helpful to you: Kelly Dabel, RD – Team

  • 3 years ago

    I’m at the point when I go in I beg for a NG tube. It hurts and is horrible to get put in but it does provide relief. I have had 2 resections. They usually tell you 6-8 weeks recovery. My first I was 21 and it was a lot easier than my second at 34. I’m in the same position as you currently. I’m on humira but it is not working have had the same blockage since January been on soft to liquid diet since then. I have had a picc line put in and get 24 hour IV nutrition at home. If not my body will live off itself rather than absorb anything I am eating. If it’s your first surgery I recommend doing it. It was a life changer for me it gave me 5 years of the closest thing to normal I’ve ever felt. I’ve had Crohn’s since 14 I am 39

  • Kelly Dabel moderator
    3 years ago

    Hi Rob Russell, thank you for sharing you story! I’m glad to hear that TPN is working for you and helping you feel better. Wishing you continued relief. Please let us know if you ever have any questions we can help with. Thank you for being part of our community! Kelly Dabel, RD – Team

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